Event on 8/30/04 in Rutherford.
Brandon Staglin, at his family home at the family winery in Rutherford. Brandon has been dealing with schizophrehenia for many years, and his parents have raised large sums of money for cutting edge mental health programs.
Liz Mangelsdorf / The Chronicle less

Event on 8/30/04 in Rutherford.
Brandon Staglin, at his family home at the family winery in Rutherford. Brandon has been dealing with schizophrehenia for many years, and his parents have raised large sums of ... more

Photo: Liz Mangelsdorf

Image 2 of 3

Event on 8/30/04 in Rutherford.
Brandon Staglin, front, with his parents Garen and Shari Staglin at their house at the winery in Rutherford. Brandon has been dealing with schizophrehenia for many years, and his parents have raised large sums of money for cutting edge mental health programs.
Liz Mangelsdorf / The Chronicle less

Event on 8/30/04 in Rutherford.
Brandon Staglin, front, with his parents Garen and Shari Staglin at their house at the winery in Rutherford. Brandon has been dealing with schizophrehenia for many years, and ... more

Photo: Liz Mangelsdorf

Image 3 of 3

A family's journey to madness and back / Son's schizophrenia spurs parents to raise millions for research

1 / 3

Back to Gallery

Brandon Staglin, national merit scholar and future astronautical engineer, was 18 when he lost half of his self. The right side, to be specific. It went away. In the blink of the eye, beat of the heart.

He spent the next week unable to sleep. He wandered the town of Lafayette, covering his right eye as he walked, fearful another personality would fill the void. He was picked up by police. Soon, he was in a locked psychiatric hospital.

That's where his parents found him when they rushed home from a business trip to Paris.

The 14-year journey from that summer of 1990, when Brandon Staglin was diagnosed with schizophrenia, reveals the tenuousness of reality, the capriciousness of mental illness and the power of a determined family.

Today, Staglin is 32 years old and managing his schizophrenia. His parents, Shari and Garen Staglin, have raised more than $22 million in direct and matching funds for mental health research and treatment. They have brought leading neuroscientists from around the globe to their Napa Valley winery. They talk openly about disorders long feared and stigmatized.

Last week, the Staglins sat in their art- and light-filled Rutherford home and shared their story. The conversation ranged from the deeply personal to the scientific. They talked about promising research they are funding, including a site in San Francisco that uses a software program to improve brain functions in schizophrenics and a center in Southern California that focuses on the early detection of psychoses in adolescents.

Brandon Staglin, whose watch beeps to remind him when he needs to take medication, recounted in harrowing, detached detail what it felt like to go insane.

"One minute, my identity was there," he said softly. "The next minute, half of my identity vanished. I walked around the house trying to call up emotions that weren't there. There was a very bright void. I remember sniffing, inhaling deeply to try to get these thoughts back into my head. I thought my soul was leaking from my head or feet. I thought I could spontaneously die."

As he talked, window washers and gardeners prepared the hillside home and grounds for the Staglins' annual mental health fund-raiser, a heady festival of wine, food, science and music. Last year's event raised nearly $2 million. This year's 10th anniversary festival will be held Saturday. The keynote speaker is Dr. Thomas Insel, the director of the National Institute of Mental Health.

Crying and confusion

The Staglins remembered the days following their son's psychotic break as a time of crying and confusion. They did their best to shield their daughter, Shannon, then 10.

The days before the break were altogether different. Brandon won just about every academic award possible. He skipped from sixth to eighth grade because of his high IQ and had above a 4.0 grade point average in high school. He scored a perfect 800 in the English portion of the SAT and a 785 in math. And he was an outstanding soccer player.

"Before Brandon got schizophrenia, he wouldn't take an aspirin," Garen Staglin said. "He was the picture of bodily health."

It was inconceivable, Shari Staglin said, that their son had a thought disorder.

"We thought there was a huge mistake," she said. "There was confusion, fear. We took him home from the hospital, and I remember him saying there was something wrong with his bed. He kept doing this unusual action with his hand. Garen took him out for a walk. When they came back, Garen said to me, 'Something is really wrong.' "

"It was everything," Garen Staglin said. "He couldn't function. He was hearing voices that were tormenting him. He couldn't get rid of incoherent thoughts."

The Staglins, who met on a blind date as undergraduate students at UCLA, quickly began to gather information, network with friends and track down experts.

'Ready to kill himself'

"At one point, things were so bad that Brandon was ready to kill himself, " Garen Staglin recalled. "He said, 'I can't deal with this. I can't live like this for the rest of my life.' I said, 'There is hope. We will figure this out. ' "

Although it was their love that drove them, the Staglins had the benefit of money and connections: Garen Staglin, the son of Italian immigrants, was a successful venture capitalist.

"We were told that he did not have a mood disorder but had a thought disorder, that in fact he had schizophrenia," Shari Staglin recalled. "I said to the doctor, 'That's the worst possible thing, right?' The doctor said yes."

"We were in denial," she said. "Schizophrenia is such an ugly term. We weren't comfortable with it then. We wondered what we had done to cause this. We thought we shouldn't have gone to Paris. We shouldn't have expected him to be a high achiever. We shouldn't have expected him to be a first-rate soccer player. We shouldn't have let him skip a grade."

They know now, however, that schizophrenia is a disorder in how the brain processes information, that it is believed to be largely genetic and that it affects about 1 percent of the population, or 2 million Americans.

It typically strikes males at around age 18 and females at around age 22. The symptoms can be easier to spot in retrospect: a change in perception, suspicion of others, a voice calling the person's name, sleep disturbances.

Brandon Staglin listened as his parents talked. After his first break from reality in 1990, he was able to return to Dartmouth in the winter of 1991. He graduated in December, 1993 with a double major in engineering science and anthropology. After graduation, he landed a job with an engineering firm in Palo Alto. He started as a marketing analyst and then worked in his dream job of astronautical engineering. He was planning to return to school for a master's degree in engineering and had been accepted to M.I.T. and Stanford.

"I wanted to make these stories of exploring the galaxy come true," he said. He held the job for a year and a half before the second psychotic break in 1996.

'A spear in my stomach'

"It was a new manifestation of my disease," said Brandon Staglin. "I would hallucinate pain. It started in my upper left forehead. Eventually I was experiencing stabbing pain in my stomach. The pain was so bad that I couldn't walk. I couldn't eat. It felt like a spear was going into my stomach."

Finally, the pain got so bad he couldn't take it anymore. Instead of giving up, however, he became determined to "bash this illness."

He was admitted to an out-patient psychiatric program at UCSF. He slowly began to improve. When the pain returned, there were thoughts of suicide. On those days, he had to restrain himself from jumping in front of a bus or leaping from the roof of his apartment building.

"I didn't commit suicide because it seemed morally wrong," he said. "And I knew there were people who would be devastated." He says he would not have made it without his family.

"They paid for my treatment," he said. "They supported me. They were there to talk with me."

As the Staglins gained an understanding of their son's illness, they began to think of helping others. Their first Music Festival for Mental Health was held in 1994 and raised $90,000. Most of the money went to the National Alliance for Research on Schizophrenia and Depression.

Council of scientists

The Staglins were soon on a first-name basis with leading researchers. They have established a prestigious council of scientists from three continents who meet once a year to share findings. A database is being created to track symptoms and promising treatments. Beginning next year, the Staglins will award a $250,000 prize to a researcher under age 45 who has a promising idea for breakthrough science in schizophrenia.

Insel of the National Institute of Mental Health, who will speak at the Staglins' event Saturday, says he plans to talk about recent scientific discoveries for psychosis. He says that one in five Americans suffers from mental illness and that he believes the decade ahead will provide great advances.

"I want to tell families struggling with mental illness that progress is being made," said Insel, whose agency awards more than $1 billion in research grants. "People with mental illness have a chronic disease, like diabetes. When this message gets out, the stigma lifts."

Tyrone Cannon, a neuroscientist, holds an endowed professorship funded by the Staglins at UCLA. He approached the Staglins with the idea of a program to identify the symptoms of psychoses. The Staglins gave him $1 million, which is part of a $5 million donation to UCLA. Cannon later took the results of the program, called CAPPS, and applied for a grant. He received $10 million from the NIMH.

"Before you can get federal dollars into any kind of new research area, you have to show preliminary findings," said Cannon. "The Staglins see the need for start-up funds. They come from the mind-set of venture capitalists."

Sophia Vinogradov, a professor of psychiatry at UCSF, began a pilot program in 2001 looking at whether patients with schizophrenia can improve through intensive training. The $60,000 pilot program, which uses software designed by UCSF neuroscientists, was funded by the Staglins.

Rewiring the brain

From her lab at the San Francisco Veterans Administration Medical Center, Vinogradov says the brain is the most "plastic" of organs and can be rewired at the molecular level. Participants come to the lab five days a week and "play" computer games. She has received a $1.1 million, five-year grant from the NIMH for a large-scale study.

"They have decreased the stigma of mental illness," Van Dyke said. "In telling their story, they are giving other families hope."

For the Staglins, the story always returns to their only son, who is learning to live again. He has let go of his dream of being a space scientist. Stress aggravates his illness. His medications -- Atavan, Paxal, Zyprexa, Risperadol -- are effective but leave him "emotionally flat." The flatness is visible in his eyes. He works at the Staglin Family Vineyard, where he writes and does Web design. He recently won a fiction contest with an essay about the mythical figures Achilles and Thetis.

He is wading into the realm of a romantic relationship but is challenged by the emotional flatness. If he reduces his medication, the illness may progress.

"People say there is nothing stronger than love," he says. "I would disagree. Psychotropic drugs are stronger."

"I'm not the dynamo I once was, but I'm feeling warmth again," he continued. "I wrote a poem called 'To Live on The Moon.' It's about the sun rising in my mind, about my starting to feel passion again, about starting to feel ambition."

The poem reads:

Why did I love to live on the moon?

Cold, remote, desolate

Yet magnificent, claimed one whom I followed

So easy it is to take life hard

So natural to be lost

So long as you don't realize it

Some part of me was talent latent

And I don't think it is now

The sun's limb warms my eyelids

Thaws my hands

Without ice, I'll need new material

The ground is still slippery

How to get up and run

God, can I even remember?

--

JAZZ, WINE AND SCIENCE

The Staglins' Music Festival for Mental Health will be held Saturday. It starts at noon with a scientific symposium led by Dr. Thomas Insel, director of the National Institute for Mental Health.

From 2 to 2:30 p.m., there is a reception with food and wine tasting, including tastings of cult wines such as Screaming Eagle, Harlan Estate, Dalla Valle and Grace Family.

From 3:45 to 5 p.m., there will be jazz from 2003 Grammy award winner Normal Brown.

Dinner begins at 5:30 and features food by Michael Schlow of Radius Restaurant in Boston. The food will be paired with Staglin Family Vineyard wines.

The scientific symposium is free, the wine tasting and concert cost $250, and the whole package including dinner is $2,500. All money raised by ticket sales and donations goes to charity.